The MS Chronicles: Helping Kids Deal with a Parent’s Chronic Illness

Eight years ago I became a parent for the first time.

Ten years ago I was diagnosed with relapsing remitting multiple sclerosis.

Simple math will tell you that I’ve been parenting with MS for my entire parenting experience.  I don’t know what it feels like to parent without a chronic illness.  In my head, I have this idea that parenting would be completely different without my multiple sclerosis but who knows if that’s even close to the truth.

What I do know is that my multiple sclerosis changes how I parent my children, both emotionally and physically.  Since I’ve had MS their whole lives, there was no point where I ever sat them down and had the “this is what Mommy’s doctor diagnosed her with today” talk.  It’s just been part of their life for the last 8 years.  Our discussions about my brain and it’s dysfunctions are a common source of conversation (and occasionally laughter) around our home.  However, there are some intentional decisions I’ve made to help our kids process the information and create an environment where they don’t fear my disease and it’s implications.

Educate

A couple of years ago, our whole family watched the ESPN documentary called “Catching Kayla”.  If you haven’t ever seen it, you need to!  It’s a great story of Kayla Montgomery, a state champion track runner, who was diagnosed with MS in high school.  The beautiful part about her story is that her coach would catch her at the end of every race.  It did a great job explaining MS and gave just a beautiful picture of how this young girl persevered though so many obstacles.  My girls STILL talk about it and was one of their first introductions to MS as a disease.

Another resource that might be especially helpful when helping kids deal with a diagnosis is Keep S’myelin, a publication from the National MS Society.  We haven’t ever used that with our girls, but the materials look great!

Be Honest, Yet Age Appropriate

My girls see me take my medicines every morning.  When they first started noticing me taking them, they were curious what they each were for and why I had to take them.  My response?  “Well, these are Mommy’s brain medicines that help my brain tell my arms and legs what to do”.  If I was self-injecting a medication like I used to, I’m sure there would be even more questions and possibly fear to deal with it.  Thankfully, my disease modifying drug is a simple pill along with other medications to help manage my symptoms.

I also try to discuss my physical limitations with them in age appropriate ways.  Sometimes I really have to humble myself to tell them why I might not be able to do something.  For instance, I might tell them that I can’t play outside with them because it’s too hot but when they come back inside we’ll do a game, etc.

What I don’t do is use big medical words that may sound scary.  Unless they ask, we don’t talk about what might happen in the future with my MS.  We don’t discuss whether someone might find a cure soon.  There will be a time and a place for those big conversations.  It’s just not at 8 and 5 years old.

Be active when and how you can

I’m probably never going to be able to run a 5K with the kids.  I probably won’t backpack through a national park with them (although let’s be honest- I’m not doing that without MS either).  What I can do is serve the runners at their school’s 5k or enjoy vacations and road trips along side them.  I can go on walks through the woods or jump in on a backyard game of baseball or soccer on a cool day.  It just takes a little more intentionality and creativity.

My 5 year old told me the other day that I was really “good at being an inside mommy”.  I won’t lie- that stung.  Then I realized that she didn’t mean for it to hurt- it was a compliment.  She then went on to tell me all the things she likes doing with me.  They were all activities that weren’t limited by my MS and in only a way a 5 year old can, she was speaking some serious truth to me in that moment.

While in many ways MS has limited me, I believe it has helped teach my girls to show empathy to those with limitations.  They’re quick to pick up things off the floor, open doors for a stranger, or just realize that we’re all created with a different set of skills and physical abilities.  Hopefully, they’ll look back as adults and realize that there were lessons they learned from seeing both the effects to my MS but also learn from how I deal with it.  Which encourages me on a daily basis to be both tough and gentle with my abilities, give and accept grace, and live the life God’s given me to His glory.

And if one of them wanted to grow up and become the neurologist that cures multiple sclerosis…..Well, that’d be great too. 🙂

 

 

Morning Routines for Working Moms (and that’s all of us)

I hate mornings.  I am not exaggerating- I absolutely despise the early hours of the day.  I’d like to say that my MS is the root cause of that but truth is that I’ve been this way my whole life.  Ask my mom.

I read all these blogs online that tell me that the only way to have a stress free morning with kids is to get up before them and be ready for your day earlier so you can focus on them.  Well, I think that’s just ridiculous.  And for some of us it’s just not feasible or wise.  And while most of what I’m about to say is specifically targeted to working moms, I think there are nuggets of truth in it for any mom.  Because when it gets down to it, we’re all working moms.

So here’s what I really think.

YOU DON’T HAVE TO GET UP INSANELY EARLY TO BE A GOOD MOM.

There. I said it.

I don’t get up more than 15 minutes before my kids.  At 5 and 7, they’re independent enough with clear enough routines that I don’t feel like it’s necessary at this season in our lives.  Of course, when they were younger I had no other option but getting up earlier.  As they got older, I kept trying to force myself to become a super early riser, and it took my husband’s reminder to give myself grace and use my time in the best way for me.  Not just doing what I think I SHOULD be doing as a mom. The key is the routine, not the wake up time.

NOTE:  If getting up early is your thing, then please do your thing.  I wish I was an early morning person.  Unfortunately, I’m a more middle of the afternoon person. 🙂 This routine works for us in part because my husband is able to do school drop off most days and I work less than 1/2 mile from my job.  I have pockets of time at other times during my day instead of just in the morning.

So why do routines matter for a working mom?  Because the less decisions you have to make, the more mental effort you can use to be present with your kids.  Time at home with your kids is a precious commodity for all moms, but especially those of us who work outside of the home.  In my experience, the key for a less stressful morning is to have a plan for what to eat and what to wear.

What to Eat

One thing you need to understand about our family is that we eat a variety of types of foods.  We don’t have any dietary restrictions and we eat a mixture of processed and from scratch foods.  If I focused on making everything from scratch I’d either blow my food budget, eat out all the time, or just go crazy.  Or maybe all three.  Again, I give major props to you moms who get up early AND make all your food from scratch.

I’d also like to be that mom that makes a hot breakfast every morning.  But I’m not.  My solution for that is to provide a variety of  premade breakfast options that can be prepared quickly and will stick with my kids and husband until lunch.  Enter the freezer.  I usually make and freeze things like breakfast casserole muffins, waffles/pancakes, breakfast burrito pouches, and sausage muffins.  Other non freezer options may include oatmeal, cereal, or toast and fruit.  When I wake my girls up, they pick what they’d like for breakfast or I may give them a choice of two depending on what’s in the freezer and pantry.  They get dressed while I make their breakfast.  Multiple premade breakfast options=less decisions for me to make in the morning.  Which is good for all parties involved.

What to Wear

I like to prepare as much as I can for the week on the Saturday and Sunday before.  Even if nothing else gets completed,  my kids will at least pick out their clothes  and I’ll have at least a bare bones meal plan.  For the entire week.  

I used to care if their clothes matched perfectly.  Now?  Not so much.

Are you clothed?

Yes?

Great.  #theend

No, I don’t allow my kids to wear a Darth Vader mask to school. But they’re totally wearing their Alabama gear.

As long as they start on Monday morning with 5 outfit options in their closet, I’m happy.   As long as it’s weather appropriate and it fits, I’m good to go.  Again, the key is not having to make a decision.  They have five different options to pick from so there’s no decision making on my part.

Why routine makes a difference

My children couldn’t be more different in their morning habits.  One is a morning person who operates at normal speeds when completing tasks and the other moves at turtle speed. All.the.time.

How she rolls.

There was a time where I actually took milk in a spill proof cup and handed it to my youngest daughter before I even got her out of bed.  Order matters to her.  The term “hangry”?  That’s ALL her.  She needs food before she can do much of anything.  Fortunately,  she’s much better at that but just simply having a routine wasn’t enough for her.  That routine needs to be in the right order.  That meant that for awhile breakfast was before getting dressed.  Now she’s able to get dressed and then come out for breakfast.  They eat and we talk while I pack lunches or empty the dishwasher. While we don’t have a sit down breakfast of bacon and eggs everyday, we do spend time together each morning in the way that works best for us- and that’s what matters. You may also need change up the routine- seasons change and we need to be willing to change with it.

Moms, don’t feel guilty for doing what works for you and your people.  Are they fed? Clothed? Loved? Are we being the best stewards of the time we have with our kids?  If yes, then way to go.

What are YOUR morning routines- I’d love to hear what works for you!

How to Travel with Your Kids and Not Lose Your Mind

We took our first road trip with our kids when our oldest child was three months old.  We were first time parents so we packed everything we owned to make the drive from South Carolina to Sanibel Island, Florida. We enjoyed that trip and two weeks later drove with that same tiny baby 800 miles to Missouri. Two years later, our second daughter made her first road trip to Missouri at barely four months old and we’ve been been road tripping it ever since!  I counted it up the other day and our seven year old has made over 15 trips that were 800+ miles one way.

The John Deere Pavilion in Moline, Illinois

Now don’t get me wrong, it hasn’t always been easy or pleasant.  There have been moments were we wished we hadn’t even left home.  When our oldest was about 9 months old we drove to Missouri during Christmas vacation we ended up singing Christmas carols to her for the last 45 minutes because it was the ONLY thing that would keep her screaming to a minimum.  We’ve definitely had our fair share of screaming, crying, and the occasional carsick child.

That moment at Disney where I knew the stroller rental was quite possibly the best idea I’ve ever had!

While it does have its moments, traveling with our kids by car is something we’ve committed to continue.  My husband and I want our daughters to see as many states as we can before they leave our home.  Let me issue this disclaimer though- it’s not for everybody.  I have friends who travel by plane consistently with their kids and truthfully that sounds absolutely painful to me.  Different strokes for different folks, friends.  My hat is off to you plane traveling people.  Call me, I’ll pick you up at the airport anytime.  In.My.Car.

But if you are traveling by car for long distances with your kids, there are some things you can do to maintain your sanity and have fun along the way.

Disclosure: Some of the links below are affiliate links that, at no cost to you, I may earn a small commission from.

Pack the right stuff

What I pack and how I pack it makes a huge difference in the success of our trip.  For most of our trips we stop for the night after driving 500-600 miles so I need luggage to be organized and be able to get my wild kiddos in a hotel as soon as possible (especially if the hotel has a pool!)  For me, that means I pack a “hotel bag” so I don’t lug every piece of luggage in for one night in a hotel.

We’re also big fans of Drury hotels when we travel.  Their rates are competitive and they have evening food along with a great breakfast so it’s a frugal way for us to stop for a night.  The food that’s included saves us at least $40-50 dollars/night.  It’s also nice to get the hotel and not have to leave for dinner.  (I promise this isn’t a sponsored post- I just really love Drury that much!)

Drury food- free and kid friendly!

What we take inside the car is just as important.  I see all these cute DIY road trip games and frankly, I tried some of those once.  And they ended up doing nothing but taking up valuable real estate in the car.

I opt to pack your typical coloring books, books to read, colored pencils, small dolls, and the DVD player.  Now that our girls are old enough, they each pack a small backpack with any small toys and books they want to keep in the car.  I also discovered the Boogie Board on our last trip to Missouri.  And y’all…they’re AH-MAZING! Theyre an e-writer with an LCD screen that kids can write or doodle on and then erase with a touch of a button. Saves me so much paper! And if you lose the stylus- just use your finger! They’re small enough to stick in my purse if we have a long wait at a restaurant  or anywhere else they may need to be still for more than a few minutes.

Like I mentioned above, we do use a DVD player for the girls to watch movies but I try to rotate movies with another non-digital activity.  Most of the time.  And then sometimes we get a few hours from home and just watch Moana and Frozen over and over. 🙂 #reallife

Be willing to stop

When the girls were babies, we stopped every 2-3 hours to feed them.  While that certainly slowed us down, we started realizing that it was actually kind of nice to stop every few hours and stretch our legs.  7 years later, we can drive more than just 2 hours without stopping but we still are always looking for a fun exit off the interstate.

Fort Defiance near Cairo, Illinois where the Ohio and Mississippi Rivers meet.

Two years ago, we traveled through South Dakota and my husband wanted to stop at the Corn Palace in Mitchell, SD.  I didn’t have any desire to see it, but everything there was free and the kids wanted to see it too, so we went to the Corn Palace.  You know what?  We had a great time and spent several hours there.  It was a random stop off the highway but was so worth it.

Use it as a chance to learn something

First of all, you need to realize that my children have two teachers for parents and one of them is a history teacher and one is a former elementary school teacher.  They pretty much HAVE to experience a decent amount of nerdiness on their vacations.  As parents, we believe that there are lessons our kids can learn from traveling.  We also really enjoy national parks and the occasional historical road marker along with the tourist traps and amusement parks. (Don’t judge 🙂 )

Before our trip to South Dakota, a friend told me about the national park passports. (Thanks Meghan!) Each national park site has a free stamp that can you add to a small passport booklet and collect as a reminder of where you’ve visited.  We bought the girls their passports at our first stop and have had tons of fun with it.  It’s even given us a reason to visit more local sites that we might not have visited otherwise.  The junior ranger programs are also age appropriate ways for them to see the parks.

LA making sure she gets her stamp for Big Springs, MO.
Badlands National Park
Gateway Arch in St. Louis

Beyond the random history knowledge they’ve picked up and my 7 year’s ability to read a road atlas (because my husband doesn’t trust the GPS) 🙂 , our kids also have plenty of opportunities of learn things like patience and responsibility when we travel.  Because it’s pretty much guaranteed that you’re going to have to wait somewhere you don’t want to, get along with your sister who’s driving you bananas, and lug your own stuff into a hotel.  And none of those are bad things.

Keep trying even when it’s miserable

It’s not always going to be fun.  Kids are going to be whiny, you’re going to be grumpy, and somebody’s going to get carsick at some point.  But no matter how hard it might be for a few miles or how grumpy I’m going to be on Interstate 40 in a Tennessee traffic jam, I’m still going to look back in 20 years and appreciate the times we traveled together.  It’s broadened their horizons, they already have great stories and memories, and most of all, it gives us a chance to connect as a family.

What are you favorite travel “hacks” for road trips?

Christmas Break Recap

As a two teacher/parent household, we’re incredibly lucky to have two weeks off together with our kiddos. It’s a privilege we don’t take lightly and we travel together as often as time and finances allow.  We spent the first part of the holidays celebrating Christmas at home in South Carolina and then spent our last week in Missouri with my husband’s family.

So many Christmas cookies!

Our girls are always thrilled to head to “the farm” and all the fun that it entails. Missouri was COLD this trip and most days it didn’t get above 20 degrees.  That’s pretty stinkin’ cold for us folks from the south!

This year, my oldest decided to complete her science fair project on the farm using her great-uncle’s horse “Chubby”.  We (i.e.- everyone but her) were all a bit doubtful whether he would be cooperative but apparently the cold made him MUCH more willing to have his memory tested by a 7 year old.  In case you’re wondering, horses CAN identify pictures- who knew?

Any of you have any good Christmas stories….or hints on making science fair boards?